Clinical Rehabilitation; 2010; 24: 1045–1056

‘Getting back to real living’: a qualitative study of theprocess of community reintegration after strokeJennifer P Wood Department of Kinesiology, McMaster University, Hamilton, Denise M Connelly School of PhysicalTherapy, Faculty of Health Sciences, University of Western Ontario, London and Monica R Maly School of RehabilitationScience, Faculty of Health Science, Institute for Applied Health Science, McMaster University Hamilton, Ontario, Canada

Received 29th November 2009; returned for revisions 30th January 2010; revised manuscript accepted 9th April 2010.

Objectives: To examine the process of community reintegration over the first year

following stroke, from the patient’s perspective.

Design: Qualitative, longitudinal, grounded theory study involving ten participants.

During the first year post discharge from inpatient rehabilitation, 46 one-on-one

semi-structured interviews were conducted with ten participants. Interviews were

completed with participants before discharge from inpatient stroke rehabilitation

and in their homes at two weeks, three months, six months and one year post dis-

charge. Analysis was guided by grounded theory methods described by Corbin and

Strauss.

Subjects: Four women and six men (mean age 59.6� 18.0, all with left hemipar-

esis and without aphasia) who had sustained their first hemispheric stroke and

were returning to the community following inpatient rehabilitation.

Results: The process of community reintegration after stroke involved transitioning

through a series of goals: gaining physical function, establishing independence,

adjusting expectations and getting back to real living. The ultimate challenge for

stroke survivors during this process of community reintegration was to create a

balance between their expectations of themselves and their physical capacity to

engage in meaningful roles.

Conclusions: Over the first year after stroke, participants reported that the process

of community reintegration was marked by ongoing changes in their goals. Formal

and informal caregivers need to work with stroke survivors living in the community

to facilitate realistic and achievable goal setting. Tools which identify meaningful

activities should also be incorporated to provide stroke survivors with the opportu-

nity to contribute and engage with others in the community.

Introduction

Advances in acute stroke management and reha-bilitation have improved survival rates andincreased the number of stroke survivors returning

Address for correspondence: Monica R Maly, 435 IAHSRehabilitation Science, McMaster University, 1400 MainStreet West, Hamilton Ontario L8S 1C7, Canada.e-mail: mmaly@mcmaster.ca

� The Author(s), 2010.Reprints and permissions: http://www.sagepub.co.uk/journalsPermissions.nav 10.1177/0269215510375901

to the community.1,2 While these outcomes dem-onstrate the efficacy of care initiatives, strokesurvivors report dissatisfaction with their reinte-gration into community.3–6 Community reintegra-tion refers to re-establishing or developing newroles and relationships.7 The transition to the com-munity remains a challenge and many stroke sur-vivors experience depression, social isolation andpoor quality of life.5,6,8–11 Clearly there is a need toreview stroke management strategies to more ade-quately address the process of community reinte-gration after stroke.Improving community reintegration requires

greater collaboration between health care pro-viders and stroke survivors. Patient priorities forrecovery differ from those of health care providersand focus on the social context of recovery, includ-ing ‘normality’, re-establishing former identity andresuming roles.12–14 In contrast, health care pro-viders focus primarily on the execution of discretephysical tasks.12 While critical in the early stagesof recovery, this focus on physical function doesnot meet all of the patient’s needs once they tran-sition to the community. Returning to work andmaintaining occupational, family, social and rec-reational roles remain unaddressed issues formany patients.5,11 After return home, social inter-actions are further complicated by an uncouplingof self-identity, personal expectations and physicalability.6,15 As survivors recover from stroke, theyneed to reconcile changes in their bodies with theirexpectations for role engagement.16 Both physicalcapacity and self-identity change rapidly over timeduring stroke recovery, making it difficult tomatch a stroke survivor’s expectations for roleengagement with their physical status.17 In orderto enhance rehabilitation it is necessary to focuson social engagement and identify changing needsduring the process of community reintegrationfrom the patients’ perspective.Little longitudinal work has documented ongo-

ing recovery from the patient’s perspective oncethey return to the community. As a result, under-standing how the needs of stroke survivors changeover time during the process of community reinte-gration is limited. A longitudinal, patient-centredinvestigation is warranted to identify the goals,challenges and needs of patients as they re-estab-lish themselves in their communities. The purposeof this study was to examine this process of

community reintegration after stroke from thepatient’s perspective.

Methods

The theoretical perspective of the authors is con-sistent with one of the tenets of symbolic interac-tionism (SI), which states that meaning is derivedfrom interaction with others. Participants wereconsidered actors who continually adjusted theirbehaviour based on their interpretation of interac-tions with others.18 Participants are believed tohave the means to control their actions, althoughthey may not always use this ability.19 Symbolicinteractionism is a complex and broad sociologicaltheory; however, in this study the authors focusedon meaning derived from interaction.

Grounded theory was selected as an inductiveapproach to provide insight into the patients’ per-spectives and to generate theory that is groundedin the data collected from the field.20,21 Groundedtheory methodology, as described by Corbin andStrauss,19 was originally designed to study pro-cesses. It was used here to provide insight intothe patients’ perspectives and to facilitate under-standing of the experiences of stroke survivorsover the first year post stroke rehabilitation.22,23

Community reintegration is a complex process andcannot be readily measured by quantitative means.Understanding a patient’s experience of stroke isessential to develop effective and appropriatestrategies to facilitate recovery and promote com-munity reintegration.15A literature review wasconducted to enhance sensitivity to relevantissues and research, and to guide development ofthe research question. Grounded theory guided byCorbin and Strauss methodology also involvessystematic data collection and analysis, includingtheoretical sampling, saturation and constantcomparison.

SamplingParticipants were recruited from two inpatient

rehabilitation facilities between 2007 and 2008.Participants were sampled from an ongoing ran-domized control trial investigating the effect ofphysical therapy intervention on physical capacity

1046 JP Wood et al.

and mobility function following stroke. From thislarger pool of individuals, information-rich partic-ipants were purposively sampled that met the fol-lowing criteria: men and women of varying ages,who were married, single, lived alone or with otherpeople, and who were employed or unemployed.24

Participants had sustained their first major unilat-eral hemispheric stroke, were English speaking,scored �24 points on the Mini-Mental StateExamination,25 were discharged home and hadadequate verbal communication (i.e. without evi-dence of receptive or expressive aphasia). Patientsdischarged to long-term care and those whoreported serious comorbidities or unstable medicalconditions were excluded. Of all patients enteredin stroke rehabilitation at these facilities, physio-therapists actively working with patients identifiedpotential participants who met the inclusion andexclusion criteria. These patients were referred toan on-site research assistant if interested inparticipating.

The research assistant formally screened eachpotential participant, explained the study proce-dures and obtained written informed consent.This study was approved by The University ofWestern Ontario Health Sciences ResearchEthics Board and the research committees of thetwo participating hospitals.

Data collectionA series of one-on-one, 60-minute semi-struc-

tured interviews were conducted with each partic-ipant. Open-ended interview questions weremodified throughout data collection, whichallowed for exploration of emerging themesraised by participants.22 Questions invited partici-pants to describe their experience of recoveringfrom stroke and to provide insight into the facili-tators and barriers to community reintegration.Questions included:

� What are your roles?� How have your relationships changed?� What do you do to fill the time?

All interviews were conducted by the same author(JW) who had no previous relationship with theparticipants. Participants were interviewed on five

occasions; in the hospital (predischarge) and intheir homes at two weeks, three months, sixmonths and one year post rehabilitation. Data col-lection continued until saturation was achievedand no new data emerged. In grounded theory,20–30 interviews are recommended to reach satu-ration.26 Interviews were audiotaped and observa-tional field notes were written. These notes andpost-interview memoing were completed todescribe context, environment and other relevantobservations during the interviews. These noteswere used primarily to corroborate data extractedfrom the interviews.

Data analysisAudiotapes of interviews were transcribed ver-

batim. NVIV07 (QSR International, Doncaster,Victoria, Australia) facilitated data managementand analysis. Guided by methods described byCorbin and Strauss, open, axial and selectivecoding were used to analyse the data.19,22 Opencoding involved reading the transcripts line-by-line and labelling all important information.Axial coding explored the relationships betweenopen codes, to create categories by linking opencodes that shared a common theme. Selectivecoding identified a core category that was centralto the phenomenon and identified a longitudinalstoryline. Categories were validated by returningto the data and obtaining direct quotations fromparticipants.

All transcripts were coded by the first author.One other investigator (MM) independentlyreviewed five transcripts as the coding schemedeveloped. The research team met weekly to dis-cuss ongoing data collection, analysis and inter-pretation. Queries and disagreements werereconciled by returning to the transcripts.Consensus was reached at every stage of analysis.

Results

The sample (n¼ 10) included four women andsix men between the ages of 31 and 79. All wereright hand dominant, had sustained an ischaemicstroke resulting in a left-sided hemiparesis.Participants included 8 Caucasians, 1 East Indian

‘Getting back to real living’ 1047

and 1 Aboriginal. Two participants lived alone(both women), six participants lived with theirspouse (one woman) and two lived with otherfamily members (one woman). Four participants(one woman) had paid employment prior to thestroke. One woman, previously not employed,gained paid employment by one year post rehabil-itation. All participants had children, however,only one had children who lived at home andrequired care (younger than 10 years old). Fourparticipants (one woman) received home careand four received outpatient physiotherapy (onewoman) following discharge from hospital.Forty-six interviews were completed. We aimed

to interview each participant in the hospital (predischarge) and at two weeks, three months, sixmonths and one year post stroke rehabilitation.Eight participants completed all five interviews.One participant moved without providing contactinformation and, as a result, subsequent interviewswere not completed (three missed interviews).Another participant missed one interview whileon vacation.

Participants described that the process of com-munity reintegration up to one year post strokerehabilitation involved transitioning between aseries of goals: gaining physical function, estab-lishing independence and adjusting expectationsto get back to real living (Figure 1). Gainingphysical function and establishing independenceoccurred during rehabilitation and once partici-pants returned home. However, it took severalmonths for participants to focus on balancingtheir expectations of themselves with their physicalcapacity. Transitioning to a new stage of the pro-cess was marked by some decrease in confidencefor engaging in meaningful activity in the commu-nity setting. Despite these fluctuations, the overallprogression through stages over one year wasmatched with an accumulation of confidence forcommunity living. Participants transitionedthrough the stages at different rates, sometimesrepeatedly, before moving to the next.Participants could also move backwards in theprocess, particularly if a set-back occurred (i.e. ill-ness or surgery).

Community reintegration

E.g. Resuming a volunteer position

E.g. Getting dressed on own

Establishingindependence

Adjusting myexpectations

Getting backto real living

Gainingphysicalfunction

Stroke

Con

fiden

ce fo

r co

mm

unity

livi

ng

E.g. walking

Figure 1 The process of community reintegration after stroke. The emergent theory of the process of community rein-

tegration involved transitioning through a series of goals. These included gaining physical function, establishing indepen-

dence, adjusting expectations and ‘getting back to real living’. Common milestones for these goals included being able

to walk (gaining physical function), getting dressed on own (establishing independence) and resuming meaningful activity

(e.g. volunteering (getting back to real living)). Fluctuating confidence for community living contributed to the non-linear

progression of the process of community reintegration. Transitioning to a new stage of the process was marked by a

decrease in confidence. Progression through stages, however, was matched with an accumulation of confidence.

1048 JP Wood et al.

Gaining physical functionGaining physical function described the partici-

pants’ goal of improving performance of activitiesof daily living (i.e. bathing and dressing) duringinpatient rehabilitation. Initially poor balanceand weakness limited participants’ abilities to per-form physical tasks such as self-care and walking.

I’m useless. I can’t do nothing. (Participant 5,Interview 2)

Another participant described his physical state:

They had to use a hoist to get me out of the wheel-chair into bed and out of the bed into the wheel-chair. So we go to the washroom, I couldn’t evenget out of the chair myself, somebody had to bethere, somebody had to wipe me, it was really adisaster. (Participant 10, Interview 1)

Most of the time was spent engaged in therapyto improve physical skills. With such a focus, par-ticipants judged their recovery based on physicalgains.

When I first came in here I couldn’t stand up, Ihad no use of the left side, I couldn’t even feel andnow I’m actually walking, I’m thrilled, and I amusing the hand which I couldn’t do before andI’m beginning to reach, which again, this handwas always held up like this but now I’m movingit and it’s just wonderful. (Participant 8,Interview 1)

Returning home required a specific level ofphysical ability and was the primary source ofmotivation. Excitement for the anticipated free-dom was expressed by all:

Tomorrow I am going home, that’s why I am sohappy. I feel like screaming: ‘Yeah, I’m goinghome!’. (Participant 3, Interview 1)

Going home marked an important milestone inreturning to normality:

There’s no bell going off every two minutes . . . thefood’s going to be a thousand percent better. Andmy own bed. And everything I’m used to at home.So it’s gonna be good. Get back to real living.

This is kinda like being in jail. I’m lookingforward to it. (Participant 5, Interview 1)

Establishing independenceOnce home, participants’ goals shifted toward

establishing independence. This stage occurredduring the first six months post rehabilitation.Establishing independence required participantsto transition from feeling overwhelmed to gainingcontrol. Essentially participants wanted:

to go where I want, when I want. (Participant 1,Interview 1)

Returning home was overwhelming.Participants were confused, busy and tired becauseof health-related appointments and visits fromfriends and family.

Everybody wanted to come and see me . . . Istayed up and visited and that tired me out . . . ittook me a long time to get over it. (Participant 2,Interview 2)

Although intended to relieve participants ofresponsibilities and ease the transition to home,visits from health care providers were alsooverwhelming:

I had the occupational therapist coming in, I hadthe nurse coming and for the first three or fourweeks some help was coming in every day. So Ifound it rather overwhelming with all these peoplecoming and I also found it very confusing andtiring. (Participant 8, Interview 3)

An inability to participate in previous rolesmade participants feel helpless and threatenedtheir independence.

I play no role in life right now. (Participant 8,Interview 2)

Physically, they relied on others for assistancewith activities, such as carrying groceries.

Now I have to wait for somebody to do it for me.It’s just not the same. (Participant 10, Interview 3)

‘Getting back to real living’ 1049

Socially, they were unable to perform previousroles such as cooking or paid work.

It’s been very hard for [my mother] ‘cause nowshe does everything. She cooks the meals, shemakes the beds, she gets the groceries.(Participant 7, Interview 3)

After stroke, confidence was dramatically altered:

I don’t know how far I am going to be able to gowhen I get back. I’m just going to have to take it abit at time. (Participant 2, Interview 1)

Decreased confidence concerning altered abili-ties and what the future may bring were describedby the participants:

There are sobering aspects of life. Will I be ableto drive? How much of my vision is going toimprove? (Participant 6, Interview 1)

Personal achievements, such as dressing andfeeding without assistance increased confidencein their ability to accomplish physical tasks.

I feel more comfortable and confident in myself.(Participant 8, Interview 3)

This contributed to the participants’ ability toestablish independence.Driving was frequently related to independence:

I can’t drive and if I can’t drive I can’t go noplace. I really want to drive, I want to be inde-pendent. (Participant 1, Interview 1)

Not being able to drive made participants feellike they were inconveniencing others as well aslimiting their ability to get around.

We’ll be able to go more places cause [my wife] isreally holding the fort here, always driving and it’squite a lot for her. (Participant 2, Interview 3)

Poor standardization surrounding the proce-dures of resuming driving was also reported. Forthose that did resume driving during the first yearpost rehabilitation, it was critical to regaining con-trol and independence.

It was getting to be a pain in the butt waiting forthe wife to be in the right mood to, especiallywhen baseball or fastball season was on, it wastoo hot or too buggy or too cold or it was too this.I said, ‘Well I’m driving, good-bye’. Now I get togo to ball games by myself and I don’t have to relyon [my wife] to drive me and stuff like that. I’vegot my freedom. (Participant 5, Interview 3)

Appropriate support from friends, family andhealth care providers also facilitated establishingindependence. Assistance and support improvedconfidence to attempt and accomplish activities.For example, instead of being dressed, one partic-ipant described that his wife laid out his clothesbut he was able to dress himself. On the otherhand, although well-intentioned, over-protectivecaregivers did not provide opportunities for par-ticipants to try activities on their own. Participantswanted to feel like they had some control over theevents in their lives.

I don’t feel in control as much as I’d like to be.(Participant 10, Interview 5)

Another participant described her family wasconstantly telling her to:

sit down . . . don’t do this don’t do that.(Participant 1, Interview 2)

Participants wanted to do things on their own:

What’s the sense in helping me? I have to do itmyself. (Participant 4, Interview 2)

Over-protective caregivers made them feelunheard and unimportant:

Nobody listens to me. (Participant 10, Interview 2)

Adjusting my expectationsDuring the next stage of the process of commu-

nity reintegration, participants adjusted theirexpectations of themselves relative to their capaci-ties. The participants’ expectations of their abilitiesto perform activities such as shovelling snow orengaging in roles such as earning money for the

1050 JP Wood et al.

family or caring for children were based on previ-ous experience prior to the stroke and their interac-tions with others. It took many participants severalmonths post rehabilitation to master this stage, andothers still had not mastered it one year after inpa-tient rehabilitation. Strategies to adjust their expec-tations included reappraising personal abilities,taking one day at a time and accepting help.

Reappraising personal abilities required partici-pants to come to terms with and adapt to changesin their bodies as a result of stroke.

I think the hardest part is getting to learn to livewith your new body. You have to take a rest whenyour body tells you otherwise you’re going to payfor it. (Participant 6, Interview 5)

Participants described changing personalexpectations:

Just do the best you can with the predicament thatyou are in and don’t expect too much for yourself,it’ll gradually come. (Participant 5, Interview 5)

Being unable to fulfil their own expectationswas frustrating and reduced motivation to partic-ipate socially or in physical activity (i.e. going outfor lunch or physical therapy). After being homefor a few months, one participant described hercontinued frustration and hopelessness:

Cause there ain’t no hope. Why should I botherwith all this [physical rehabilitation]?(Participant 7, Interview 4)

To manage expectations and decrease frustra-tion, some participants tried to

take one day at a time. (Participant 9, Interview 3)

This strategy forced participants to live in thepresent and not focus on the future:

Just think you are alive, enjoy life, don’t worryabout the next day, the next month. (Participant3, Interview 3)

This approach was essential to balancing per-sonal expectations with their goals for living inthe community.

Interactions with family, friends and formalhealth care providers were an important influenceon the expectations stroke survivors had of them-selves. Accepting help from others was a struggle.Participants felt their independence was compro-mised when they required help from others.

The hardest thing is accepting all that help andnot be able to do anything. That’s the hardestthing. I had to sit back and let them do thingsfor me . . . they want to do everything for me, sitdown, Ma sit down, we’ll fix you a cup of tea . . .it’s hard when you are used to doing everythingmyself. (Participant 1, Interview 2)

However, learning to accept help enabled par-ticipants to engage in activities they enjoyed and toparticipate socially.

Well there are some things that you know youneed the help and there’s other things that youdon’t need the help. (Participant 5, Interview 5)

As a result participants were able to interact inthe community:

When it comes to social events and going out Ihave to thank my friend because she drives andthe same thing with my son, they take me out forthe day or he picks me up and takes me for theweekend, so I have to attribute that to those peo-ple . . . it’s encouraging that these people arearound me. (Participant 8, Interview 3)

Getting back to real livingTo reintegrate into community, participants

strived towards

getting back to real living (Participant 5,Interview 1)

by engaging in meaningful activities as well asmaintaining and developing relationships.Interactions with others were critical to gettingback to real living and this stage occurred in the lat-ter half of the first year post stroke and remainedan ongoing challenge for the participants.

‘Getting back to real living’ 1051

Social integration and social life to me is veryimportant in my life. To be with other people, tohelp other people such as my volunteer workwhich is also social work, I feel that I am a partback into life again. (Participant 8, Interview 5)

Meaningful roles, activities and relationshipswere fundamental to finding fulfilment and enjoy-ment in daily living. Most but not every partici-pant had reintegrated according to their commentsregarding fulfillment and enjoyment in life by theconclusion of the study. Some participantsdescribed that they were not able to reintegrateinto community by one year post stroke. Theseparticipants did not engage in valued roles oractivities and were unable to develop and maintainmeaningful relationships.

I’ve watched people I’ve known while they were inthe hospital. Their wives were very loving andvery attentive and now after six months they’regoing well shouldn’t you be able to do that?There’s a lot of different problems. (Participant10, Interview 3)

For the participants, loss of roles within thehome and community resulted in dissatisfactionand boredom. Participants were upset to seeothers assume roles and responsibilities that theycould no longer perform.

When I see a bunch of snow, I see her [wife] outthere shovelling I get very upset with myself. Shedoesn’t get mad or anything but she’ll come in andher hip will be sore or she’ll be cold . . . I want tobe doing it. (Participant 9, Interview 2)

Participants unable to fulfill previous roles, suchas employment, were also the same participantsthat described being unmotivated to engagesocially.

I used to be social and I’m not so much anymorebecause we don’t have the same interests anymorebecause you know, you have friends at work, theystay at work, you have friends at bowling, theystay at bowling, they just stay in their own groups.I don’t go bowling and I don’t go to work so I’vegot nothing to talk about . . . You run out of things

to talk about unless you’re out there mingling.I don’t have anything to say anymore, nothing.(Participant 7, Interview 3)

Participants with smaller social networks oftenfelt like a burden to others, had low motivationand fewer opportunities to engage in meaningfulactivity. The interruption in meaningful activityhad a significant impact on well-being:

I gotta wait for her to be ready to do it and so it’sreally not the way I’d like my life. Cause I used torun all the errands. I used to go buy the groceriesand stuff and when I got up in the morning Ialways grabbed the grocery list, I’d go out andhave coffee, I’d read my newspaper and then onthe way home I’d stop at the grocery store andbuy that stuff well I can’t do that, I miss that andshe doesn’t agree with me that I should get mylicense back and it’s like jail. (Participant 10,Interview 5)

As one year from discharge approached, severalparticipants described that they were able toengage in meaningful activities:

We all went to see five different plays this winter.I really enjoyed that . . . we’ll probably go again.(Participant 1, Interview 5)

Meaningful activities provided fulfilment andsatisfaction.

My life is totally, totally full. Computer, family,painting, you know it’s a very full life . . . becausewe have a million things to do, so it just astoundsme how quickly time goes. (Participant 6,Interview 4)

Another participant gained a new dimension tolife from the employment she gained after herstroke.

If I stay at home then I feel so much stress andeverything but not if I go out of the home, sothat’s why I took the job . . . I am going outsideand talking with people and I forget about myhome, my kids and everything so that’s why Itake the job. (Participant 3, Interview 3)

1052 JP Wood et al.

Meaningful activity also provided participantsopportunities to give back, particularly to thosethey cared for.

I love being with children and I feel satisfied that Ihave given a little of my time. (Participant 8,Interview 5)

Discussion

This study exposed the progression of goals thatcommunity-dwelling stroke survivors aimed toachieve during the first year post discharge frominpatient rehabilitation. Previous phenomenologi-cal work showed that stroke survivors rebuilt andreappraised their personal and social worlds.27

Our findings contribute to the development ofthe process of community reintegration by identi-fying the ongoing change in goals that occurredbeyond institutionalized stroke rehabilitation.For example, establishing independence occurredearly, once participants returned home. However,they required several months before they focusedon balancing their expectations of themselves withtheir physical capacity. Some participantsdescribed that they were not able to create thisbalance and did not reintegrate into communityby one year post stroke. For these participantsthey described being unable to re-establish ordevelop new roles and relationships within theirhome, family or community. The findings suggestthat the needs of stroke survivors are constantlychanging over the first year following stroke.Previous research has also demonstrated thathealth care providers, friends and family need tounderstand the evolving priorities and needs ofstroke survivors to provide individualized, timelyand appropriate care.28

Creating balance between capacity, self-identityand personal expectations was the ultimate chal-lenge of community reintegration. Participantswho were able to come to terms with and adaptto their new capacity used strategies such asaccepting help and taking one day at a time,adjusting their personal expectations. Patientswith mild stroke, such as those in this study, are

frequently frustrated by unfulfilled expectationsthat they set for themselves. Some stroke survivorsexperience uncertainty in their day-to-day livesand they managed this uncertainty for the futureby ‘taking each day as it comes’.29 Other literaturehas also highlighted the importance of expecta-tions during stroke recovery. Carlsson et al. inter-viewed 18 community-dwelling persons one yearafter sustaining a mild stroke (Barthel Indexscore 450) to investigate how they coped withtheir new life situation. Being unable to fulfilexpectations set by others decreased the strokesurvivors’ confidence for community living.30 Incontrast, the findings of the current study empha-size that the expectations set by the stroke survivorthemselves are most important to community rein-tegration. Stroke survivors need to re-evaluate andreset their expectations to a level congruent withtheir new reality.31 Thus, an important goal forstroke rehabilitation is to engage formal and infor-mal caregivers in facilitating realistic and achiev-able goal setting by stroke survivors while living inthe community.

Fluctuating confidence for community livingcontributed to a non-linear progression of the pro-cess of community reintegration after stroke(Figure 1). Whenever participants were transition-ing to a new goal, for example from gaining phys-ical function while in rehabilitation to establishingindependence within the community, the experi-ence was marked by a decrease in confidence.This decreased confidence was the result of beingfaced with challenges not experienced since theirstroke. Progression through each stage, however,was matched with gradual increases in confidencefor community living as participants gained expe-rience and were exposed to other confidence-build-ing sources. Confidence for community livingreferred to feeling proficient with new or previ-ously held meaningful roles and interacting inthe community with an altered capacity and/orphysical ability.

Confidence for community living reflects theconcept of self-efficacy proposed by Bandura inSocial Cognitive Theory.32 Self-efficacy is definedas a person’s belief in his or her capabilities tocomplete a specific task or activity.33,34

According to Bandura, sources of self-efficacyinclude mastery, social persuasion, modelling and

‘Getting back to real living’ 1053

physiological arousal. Previous research reportedthat stroke survivors with high self-care self-efficacy demonstrated better quality of life andless depression.35,36 Poor balance self-efficacy,which reflects a fear of falling, loss of balanceand unsteadiness, is a psychological barrier thatmay lead to activity avoidance, deterioration ofphysical function and poor community reintegra-tion.6 After discharge from inpatient rehabilita-tion, opportunities for mastery of physical tasksand modelling from peers are reduced and avail-ability of social persuasion varies for each individ-ual. Hence, the transition to the community posesa substantial challenge for stroke survivors due toreduced sources of self-efficacy and fewer oppor-tunities to develop confidence for communityliving.Engaging in meaningful roles presented another

challenge to stroke survivors as they reintegratedinto community. For the participants, examples ofmeaningful roles included but were not limited topaid employment, volunteer positions and familyroles such as childcare and contributions to house-hold responsibilities. Meaningful roles provideenjoyment, motivation, fulfillment and quality oflife.30,37–39 However, loss of employment and lei-sure has been frequently reported followingstroke.11,15,40,41 Reduced ability to perform rolescontributed to isolation, boredom and a decreasedsense of well-being among community-dwellingstroke survivors.9,42–44 In addition to this litera-ture, our findings indicated that meaningful roleshelped to resolve changes in self-perception thatoccurred after stroke. Since perception of oneselfis influenced by occupational status and interac-tions with others, this aspect of recovery cannot beoverstated.45 Consistent with our findings, thestruggle of chronically ill patients to accept theirillness and changed self-perception involvedadapting and accommodating for physical losses,leading to acceptance of illness and improvedrecovery.46 Thus, it was not surprising that engag-ing in meaningful roles was an important source ofself-perception and pivotal to community reinte-gration for participants in this study.Recently, the physical and emotional health of

stroke survivors has been examined throughengagement in meaningful activities.17 For exam-ple, the Lifestyle Performance Model (LPM)describes that meaningful roles help individuals

actualize their life’s meaning in four domains:(1) self-care, (2) societal contribution, (3) interper-sonal engagement and (4) intrinsic gratifica-tion.47,48 Consistent with these LPM domains,stroke survivors in this study emphasized theneed for independence in self-care tasks, makingcontributions to their households and communi-ties, and interaction with others and enjoymentthrough activity. Interestingly, the participants inthis study generally addressed these domains chro-nologically over their first year post rehabilitation.Thus, the LPM provides an excellent frameworkfor providing support once stroke survivors returnhome. Facilitating participation in meaningfulactivities should be incorporated into the long-term care of stroke survivors.17 Interventionspost rehabilitation should incorporate the use oftools which identify activities that provide oppor-tunities to contribute, gain mastery and engagewith others in the community.

One limitation of this study was generalizability.The cohort examined was a subcohort of a largerandomized control trial, restricting the transfer-ability of the results. Participants were also higherfunctioning and younger compared with thereported demographics of the stroke population.Although diversity was achieved in gender, work-ing status and living arrangements, we did notachieve diversity in the severity of stroke. Strokesurvivors with receptive or expressive aphasia, orleft hemispheric stroke were not included becausethe study inclusion criterion required adequateverbal communication skills. Because all partici-pants scored higher than 24 points on the MiniMental State Exam (MMSE), the experiences ofstroke survivors with aphasia or cognitive disor-ders were not included. It is important to recognizethe type of participants in this study when consid-ering the transferability of the findings.

Several participants were unable to create a bal-ance between their capacity and their expectationsof themselves and had not reintegrated into theircommunity by one year. These expectations werebased primarily on their interactions with others.Therefore, providing caregivers and health careprofessionals with insight into the changing goalsand challenges faced by stroke survivors willenable them to change their interactions withstroke survivors to provide timely and appropriatesupport. Clinicians need to address the importance

1054 JP Wood et al.

of creating balance between capacity and personalexpectations. Challenges that may be faced by thestroke survivors need to be addressed by providinga realistic prognosis of capacity. However, byworking with stroke survivors, health care pro-viders can help them to set realistic and attainablegoals for themselves. Development of these goalswould benefit especially from developing self-efficacy through mastery of skills.

Stroke survivors would also benefit from peersupport through stroke groups or clubs. Giventhat the process of community reintegration willprobably continue for the duration of the strokesurvivor’s life, future studies need to examine com-munity reintegration beyond one year post reha-bilitation to understand the challenges faced bystroke survivors of all ages with time. Futurework should also examine the experiences of care-givers, family and friends during stroke recoveryto provide new perspectives of supports needed tofacilitate community reintegration. There is a clearneed to assess and properly support caregivers asthey care for and aid stroke survivors in thecommunity.

Clinical message

� Community reintegration requires strokesurvivors to create balance between theirexpectations of themselves with their physi-cal capacity. These expectations are influ-enced by interactions with others andstroke survivors would benefit from commu-nity support networks and facilities that pro-mote engagement in meaningful rolesthrough interaction with peers, informaland formal caregivers.

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